(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@digmeme

I have been dealing with this since it was finally diagnosed January 2016. I began the 3 drugs immediately and had all sorts of trouble with them. I was in bed for 17 hours one time with 5 layers of clothes on, deathly sick, screaming with leg cramps and sweating like I was a wet wash rag. I was immediately taken off the drugs and had more tests and I had bronchitis. Then put on another med for that. I have not been happy with my pulmonologist in Fayetteville, AR.
FINALLY……………yesterday…………………answers from Dr. Stephen Hennigan, an Infectious Disease Specialist! He sat and talked to me about this stuff for 50 minutes! He said I was taking too much of the meds…….high dosages! He took me OFF everything until I have a CT Scan of my lungs this Friday for him to evaluate. I do not know if any of you are believers in essential oils…….I wasn’t either……had never used them until I went for my mammogram about a month ago and the technician who I have known forever started telling me how great THIEVES essential oil is for tLhe immune system. Her bottle came from Young Living essential oils and I got mine from Bulk Apothecary. I put 4 drops in my diffuser right beside my nightstand and it runs for 5 hours……I am amazed………..and I mean amazed. I also put 2 drops in my last sip of coffee every morning (beware: it’s horrible tasting, but very safe). I told the doctor yesterday how much better I feel. He will evaluate my scan as soon as he can and then decide what to do about meds…..he did not even mention the main 3 that everyone takes………….he mentioned 2 totally different ones. I am going with this guy for sure! He also told me that there is a very good specialist on MAI/MAC in Tyler, TX if any of you are close there. I can also find out his name if anyone needs it!
So………………if you question your doctor…………………go see another one for a second opinion! I have Medicare and also a supplement that have paid for everything so far, once I met my $166 deductible for Medicare!
I asked the doctor if I was going to die and he said yes…..everyone is going to, but I am not going to die from MAI/MAC……………and I truly thought it was killing me! Hope this helps!

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Hello Cathy, good luck on Monday! Been in your shoes many time! I just told myself “Put my energy into what I can control .. let go of what I can’t control!” To me that meant .. put my energy into keeping my lungs as healthy as I could possibly do by exercising .. following what my doctor told me to do .. and letting go of what I couldn’t control .. the progress of my disease!

Be doing this .. in time I DID BECOME “STABLE”! I have been off antibiotics since May 2014 and am living life happily and well! Just keep plugging along .. doing the VERY best you can and focus on the positive .. AND let us know how you are doing! Keep us posted!
Sending you a hug! Katherine

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@heathert

I agree that if the scientists had some money to put into this they may find the answer quite soon, there is enough of us with this for the pharmaceutical companies to look into this a bit more. Wish I knew how to get this ball rolling. My doc said there is no new medicines in the pipeline just rehashing of the old antibiotic meds. We need new antibiotics to be produced, and not just for MAC, it has been in our news alot.

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AWESOME NEWS!

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Hi all, I have been on inhaled Amakacin since Wednesday and have no voice at all this afternoon, does anybody have any advice on inhaled Amakacin side effects? We went to a disney on Ice show today and my voice wasnt great before it ,but I think the air conditioning has probably made it worse. Any advice greatly appreciated, its a strange feeling.

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Hello heathert, sorry to hear this .. yuck! Personally I did not have any side effects from the inhaled Amikacin in the thirty months I did it .. other than the inconvenience! I now have “dry mouth” and have wondered if that might be a resulting? Who knows .. could just be the aging process .. or from other drugs .. hard to tell.

But I just googled it .. and hoarseness is a side effect of inhaled Amikacin. It did say: Subsequent episodes of oropharyngeal problems were prevented with improved vigilance of mouth care (including mouth gargling as well as rinsing) after each dose administration.

I wonder if this might help? Things that have helps me with my mouth and throat health has been Biotene products. The dry mouth oral rinse plus the oral balance gel both have helped me. I also wondered if the old fashioned gargling with HOT salt water might feel good on your throat? I know I always do that with a sore throat. Just my thoughts. Hope they might help you! Sending you a hug! Katherine

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Thanks so much Katherine I will try the salt gargle, and rinsing, I do not have a sore throat, I just cannot speak(so strange), my voice box is completely gone, so frustrating not being able to go anywhere or even talk on the phone. I just hope its worth it, I have heard how great it is so will keep at it.

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I had my first appointment with a new infectious disease doctor that recently moved to our area. He is very familiar with NTM’s and I was able to get a lot of information from him. I have been waiting for the results of the last 3 sputums that have been at the lab for the past few weeks. My pulmonologist has been testing me for MAC since I tested positive on 2 previous sputums. Yesterday, the ID doctor said that the latest sputum tests are showing mycobacterium fortuitum, which is in the same class as MAC, only it is much faster growing than MAC and only requires 2 antibiotics for a minimum of 12 months, taken daily.

He also said there is a possibility that I have both MAC and m.fortuitum. If that’s the case, I may have to take 4 or 5 antibiotics. He also said there is much more research on MAC than on the other, therefore, I haven’t been able to access much on the internet about m.fortuitum. I have a follow-up appointment with him in 3 weeks and at that time he will have a more accurate diagnosis and we’ll discuss treatment.

I’m wondering if anyone out there has been diagnosed with m.fortuitum, and/or if any of you have any information about it.

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Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease. I also was diagnosed with a second mycobacterium .. not m. fortuitum but it was MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . The “abscessus” was a difficult one to treat so I also had to take 4-5 antibiotics because of that second mycobacterium. Don’t be afraid. It isn’t the end of the world. It IS a pain in the neck! BUT I DID come out at the end of the tunnel and have been “stable” since May 2014. So I am just glad you are in good hands .. keep a positive attitude and just do your level best to keep yourself as healthy as possible. I am sending you positive energy and a hug! Keep your chin up! Katherine

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@katemn

Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease. I also was diagnosed with a second mycobacterium .. not m. fortuitum but it was MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . The “abscessus” was a difficult one to treat so I also had to take 4-5 antibiotics because of that second mycobacterium. Don’t be afraid. It isn’t the end of the world. It IS a pain in the neck! BUT I DID come out at the end of the tunnel and have been “stable” since May 2014. So I am just glad you are in good hands .. keep a positive attitude and just do your level best to keep yourself as healthy as possible. I am sending you positive energy and a hug! Keep your chin up! Katherine

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Thank you so much for your kind words of encouragement. I am so happy that I found this blog and signed on. We are all in the “same boat” and it’s nice to listen and talk to others with similar issues. My ID doctor is familiar with this blog and he did put in a good word for it as well.

Liked by Paula_MAC-2007

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@katemn

Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease. I also was diagnosed with a second mycobacterium .. not m. fortuitum but it was MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . The “abscessus” was a difficult one to treat so I also had to take 4-5 antibiotics because of that second mycobacterium. Don’t be afraid. It isn’t the end of the world. It IS a pain in the neck! BUT I DID come out at the end of the tunnel and have been “stable” since May 2014. So I am just glad you are in good hands .. keep a positive attitude and just do your level best to keep yourself as healthy as possible. I am sending you positive energy and a hug! Keep your chin up! Katherine

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Katherine
I started Rifampin 3 days ago, in addition to Ethambutol and star azythmycin tonight. The Mayp phamacist said to take them at night.
Last 2 nights I can’t sleep, insomnia and nausea. I was feeling so good and wondering did you have this and did it pass after a time. I’m so exhausted from not sleeping.

What time of day did you take yours? I take BP meds in AM.

Thanks for suggestions
Kay

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@katemn

Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease. I also was diagnosed with a second mycobacterium .. not m. fortuitum but it was MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . The “abscessus” was a difficult one to treat so I also had to take 4-5 antibiotics because of that second mycobacterium. Don’t be afraid. It isn’t the end of the world. It IS a pain in the neck! BUT I DID come out at the end of the tunnel and have been “stable” since May 2014. So I am just glad you are in good hands .. keep a positive attitude and just do your level best to keep yourself as healthy as possible. I am sending you positive energy and a hug! Keep your chin up! Katherine

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Kay I am on all 3 antibitics as well. First day I took the R one in the am and the A and E ones at dinner.  I felt nausea after dinner so I started taking the A with lunch and the E with dinner and that seems to have helped me.  I think the A has less side effects when taken with food and without other meds…at least for me. Good luck finding what works best for you.

Liked by Kay Strand

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Jill, do you have trouble sleeping?
I think it’s the Rifampin…2 hours last night and I’m wiped. Thinking I should take it in am. Do you take it, when, and any sleep problems? I always sleep great so it must be the drugs.
Thanks
Kay

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@kaystrand

Jill, do you have trouble sleeping?
I think it’s the Rifampin…2 hours last night and I’m wiped. Thinking I should take it in am. Do you take it, when, and any sleep problems? I always sleep great so it must be the drugs.
Thanks
Kay

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Kay I’ve never had issues sleeping…ever, thank goodness.  Yes I take the Rifampin right after breakfast.  And usually by bedtime it’s out of my system as my urine is clear again.

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@katemn

Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease. I also was diagnosed with a second mycobacterium .. not m. fortuitum but it was MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . The “abscessus” was a difficult one to treat so I also had to take 4-5 antibiotics because of that second mycobacterium. Don’t be afraid. It isn’t the end of the world. It IS a pain in the neck! BUT I DID come out at the end of the tunnel and have been “stable” since May 2014. So I am just glad you are in good hands .. keep a positive attitude and just do your level best to keep yourself as healthy as possible. I am sending you positive energy and a hug! Keep your chin up! Katherine

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Kay, here are some notes I took when I was on the antibiotics .. this is what worked for me .. each person is different and I think you kind of have to play around with it .. but this is what helped me. I HOPE it helps you. I know how tough it is in the beginning .. my heart goes out to you .. just stick with it .. it does get easier. Let me know how it goes .. please! Sending you a hug! Katherine

My notes:
NOTES ON TAKING ANTIBIOTICS
Wake up a.m. and take probiotic on empty stomach
Ripampin (odd feelings in legs at night) 1 hour before or 2 hours after a meal with a full glass of water- 4 hour before vitamins
Ethambutol and Avelox (sleep disturbance) with Azithromycin: after breakfast with a full glass of water
8 hour before or 4 hours after multi vitamin
Bedtime: take regular p.m. meds & multi vitamin, Evista, Lipitor and p.m. probiotic.
Separate multi vitamin & probiotics from antibiotics by at least 4 hours if possible)

REPLY
@katemn

Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease. I also was diagnosed with a second mycobacterium .. not m. fortuitum but it was MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . The “abscessus” was a difficult one to treat so I also had to take 4-5 antibiotics because of that second mycobacterium. Don’t be afraid. It isn’t the end of the world. It IS a pain in the neck! BUT I DID come out at the end of the tunnel and have been “stable” since May 2014. So I am just glad you are in good hands .. keep a positive attitude and just do your level best to keep yourself as healthy as possible. I am sending you positive energy and a hug! Keep your chin up! Katherine

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Kate
I’ll try this. Rifampin in AM then? Just not clear on that.

Also, my sleep seemed fine on Ethambutol but went south w Rifampin. I start Azithromycin today for first time. Will take w food at lunch instead of tonight, since sleep was a problem for you with it.

I know we’re all different, but I’m so uncertain now I am happy for suggestions.

I can live with nausea but I need my sleep!

I so appreciate your help. I’m trying to figure this out to make it work!

One last question, did the sleep and nausea get better after awhile?

Thanks, Kay

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The meds do not affect my sleep as I did not sleep good before I even knew I had MAC. I am going thru the hot/cold flash thing, tossing at night, but I cannot blame the meds……

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